AutoImmune Hell

or heaven?

After just four days of 15 mg per day of Prednisone, am feeling like I may live. The muscle and joint pain is much better, and I definitely have more energy.

But the past four days have NOT been easy; not only was I so ill, but this time the Prednisone (or something) really whacked out my blood glucose, and I've been fighting highs on top of everything else. I'll really have to watch my BG's carefully the next couple of days. After I start getting/using more energy, those numbers will drop fast and dramatically. Soon I will have to set my Insulin Pump on the 50% pattern I've programmed in...

But I'm also taking Plaquenil 200mg twice a day. It's supposed to take weeks to start working, but I thought it was helping a little after just a couple of days (and that was before I started the Prednisone). Perhaps just the Placebo effect...

Some of my friends are concerned that I'm going to be taking Prednisone for weeks this time. But you know what? It was not a difficult choice: take the chance of gaining weight or be totally non-functioning from pain and 'flu' like symptoms. No choice really....

Cardiac Check Up

Today I went for my once every 3 years echocardiogram and ecg and visit with the cardiologist. Absolutely great news; there is NO evidence of any damage to my heart from Hereditary Hemochromatosis.

This was a couple of hours long appointment, and then the wheelchair transit there and back. It was exhausting, and I KNOW I'll pay for all that exertion tomorrow; I already am.

I get so tired of docs & tests...

Sjogren’s Flare & Complications

A routine, follow-up appointment. But it turns out that the recent swelling in my right (my only ‘good’ foot left!) may be auto-immune related. It is unrelieved with either elevation, rest (I am in a wheel chair for heavens sake!), or a mild diuretic. I have actually had this before, but not nearly this bad or for this long.

And the fatigue, muscle and joint pain, has gradually been returning. I sure do not feel as well as I did; it is all returning, in fact I spent half of yesterday in bed (but last week my Hemoglobin was up to 15.8, which does not help!). I left her office with a prescription for Plaquenil, and Prednisone, and orders for more lab work that will be done next Tuesday.

The lab work is still more ‘specialized’ stuff, and it is interesting really. She ordered a C-Reactive Protein (which has remained elevated for months), some other routine ‘rheumy’ stuff AND two tests that have something to do with my foot swelling from MORE complications of Sjogren’s Syndrome: Cryofibrinogen and Cryoglobulin (I have never heard of these!). I have to be fasting, and have to be in the lab, (Scripps Mercy) for them to draw the blood for these tests, which is why it has to wait until next Tuesday. (I will ‘piggyback’ the lab visit with still another doc appointment I have that day.)

I started the Plaquenil, but it can take 6 weeks to ‘cut’ in. The Prednisone I cannot start until I have the blood drawn Tuesday. I plan to take 3 tablets with me (as well as something to eat), and take them as soon as the blood has been drawn!

Prednisone – This time, I am starting at 15mg a day for a week, then down by half a tablet per week, until I am off it. I am not looking forward to the ‘jitters’ it gives me, but AM looking forward to feeling better.

My deep dark fear is that all this stuff is from malignancy not autoimmune, though I have had autoimmune problems all my life. (My yearly CT scans are due shortly.) Still, you cannot reason with fear...

New Glasses, New Do!

I certainly get my haircut more often than I get new glasses. But I always get a haircut when I do get new glasses!

So yesterday, even though I am suffering fatigue again, I went to Ocean Beach to pick up my new glasses, and on the way home, got a haircut. Why does that always make me feel better?

I have needed a haircut for the past couple of months, I was way past 'shaggy'! I've been watching the 'junk mail' for a coupon for my local shop, but I never did find one. I had to pay full price!!!! (sob)

I did not try to stop by and see, or leave a message for, my Grandson, it was just too hot, and I was out of gas (metaphorically speaking), by then. And I immediately felt guilty...

This morning, I fired up my trusty little web cam and took some pics of myself. Actully the results aren't too bad; it's intrinsic 'fuzziness' hide my age well! The picture above is probably the best – shows off my new glasses and haircut!

Off my hook - 7 x 9 Rectangle Throw

Finally Completed! 7 x 9 inch rectangles, 5 across, 6 down. Made with scraps of 4 ply (ww), all in half double crochet, and an H hook. Joined/edged with a chocolate brown in sc.

Almost Off My Hook - 7 x 9 Rectangle Throw

Or almost anyway! Today I finished the 25th 7 x 9 rectangle (including borders!). It's for my love seat sized couch, so it will be 5 rectangles wide by 5 long. Now all I have to do is put it together and weave in a few 'tails'. Probably another week or two of work (some days I don't crochet, and some I just do a little).

I'm definitely looking forward to finishing this! I don't know why I picked such a big project to re-start crocheting! Thinking back, I guess it was because most of my yarns are 'donated' and I don't have a lot of any one color or weight, that limited what I could do. I still don't have any threads, nor cotton yarns...

My next project? A whole bunch of 4x4 swatches with different stitches, ww & sport, and different sized hooks (I now have a good basic set, but no 'big' sizes; no M, P, S...

Then after that, a kind woman donated 3 skeins of bulky chenille (black), and I'm going to try a scarf for a friend.

Am really, really enjoying it. And what a stress reliever!

Update on The Cat with No Name

I think the antibiotic did the trick! He has finally healed. He is coming twice a day to eat now (dry food & water are there all the time), drinks well, only cries now when it dinnertime (1/2 can of canned food), and he is drinking enough water.

As the amount of testosterone he has decreases, he has become less ‘jumpy’ also. He now will actually stay on the patio as I put out his food. So, he is very gradually letting me get closer and closer to him. Perhaps someday he will let me pet him!

He tries to come in, wants to come in! And sometimes he does, if I know I’ll be sitting right there to watch him. Otherwise, I have to be very careful to keep the screen closed, as he still ‘sprays’! It is my hope that the ‘older’ he gets, and the further away from being neutered, that he will stop this, at least inside! Not to mention, that he has fleas...

I watched him yesterday as he lay in the grass in the shade of a big tree, interacting with the Sisters, and he seemed to be enjoying life.

It has only taken: 10 months, 2 Organizations (SNAP & Feral Cat Coalition), 4 volunteers (not counting those at the spay/neuter clinic), three different traps, a 'donated round of antibiotics' and me feeding and talking to him to make his little life better.

The only thing I would add, if I could, would be some kind of retribution for the people that don't spay/neuter their animals when they are young, then abandon them, when 'nature' takes over!

It makes me happy! I have been at trying to ‘help’ this abandoned cat for 10 full months now; at times it’s been very vexing, stressful, and frustrating. But think we’re there now...

Power Wheel Chairs 101

Many disabled people, those that can work, or have family, own several wheel chairs! As each chair does different things; ie an 'inside' chair, an outside chair, a heavy duty 4 wheel scooter (for local shopping), a chair that will fit inside (to drive) a 'disabled' vehicle, a manual 'emergency chair' that will fold and go in a car, and so on. I actually know some of these 'multiple' chair people. Wish I were one of them!

Yet no matter how I've tried, I've always been unable to have more than ONE, the one I am in! Mainly because with only one chair, they are way past any kind of repair when I get a new one (ie like a car, it can be more expensive to repair than get a new one). In fact usually they are by then 'non-working' and I am stuck in bed!

I am in that position now. My one chair (3 years old), not meeting ALL my current needs. Mainly, I can not reach stove, counter tops, and the like from this chair. Since I could pull myself to a standing position, even take a few steps when I got it, this chair was not configured to do ALL that I need. And THIS chair, though a good one, IS three years old now, and on it's 'downhill' cycle.

I have no qualms about getting used chairs; in fact, I keep looking on Craig's List, etc. Just have never found one, or they want way too much for it, and/or it has no batteries (in which case, you don't even know if it works but they want cash for it!), etc. Then in addition, you have full cost of repair, no warranty, etc. But I do keep looking!

I would venture to guess that within 5 years, - power chairs prices are coming down so much, and so fast - that they will be like many 'major' electronics ie, you will be able to buy just by 'assigning' a monthly payment from your checking account.

But, this is now. IF I had a credit card (they don’t give people with monthly incomes of $867 month, credit cards!), I would have BOTH these chairs here next week!

1) Power Chair
http://www.spinlife.com/shopping/cartnew.cfm?added=true&CFID=6400969&CFTOKEN=31237382

2) Manual ‘Emergency’ Fold and Go Chair:
http://www.spinlife.com/Invacare-Tracer-IV-Heavy-Duty-Wheelchair/spec.cfm?productID=108

And life would be not only easier, but less stressful, and more fun!

There is no such thing as being dis-abled, there is only not having the 'right' equipment!

Power Chair Fun & Games 2

I cannot believe it! I got stuck in my wheelchair again! And so soon after my last wheelchair ‘adventure’. This time it was my own fault, and it was really funny! I was laughing at myself all the way through it.

The gardeners were here yesterday, including raking, the area beside my building where I have my radio antenna wire laying on the ground. So I went outside to check it. I do this almost daily, but from the sidewalk.

Today, I could see that the gardeners had messed it up, they had draped it in a tangle over a bush and it was very visible.

Since I had one of my reachers with me, I went up on the grassy area, no easy task, and something I try not to do, as the area is full of lumpy surface tree roots that mostly I can not see. But I’ve done it before, when I have had to, and saw no problem with doing it again.

Except that this time I could not quite reach the antenna wire with my reacher. I was just inches away! I went forward just a a bit. Nope, the wire was STILL just out of my reach. I inched forward just a little more! Success was mine, I could grab the wire with my reacher. I worked it back down to the ground, behind the bush, where the apartment management would not easily see it.

But now I was fully between the bushes, which quickly scratched up my legs and got entangled in the spokes of my tires. When I got the thick branches unentangled from my spokes, and tried to back out, the tires of my chair just spun.

Without realizing it, by inching forward, I had gone into the sand. My tires do not do ice, mud, wet grass, or soft sand! (Now this sand is usually hard packed, I have even done this once before, but the gardeners had ‘raked’ it heavily, so that NOW, it was soft and dry.)

I tried every way I could to get unstuck and back on the grass. I tried slow and fast, and going in all different directions. I rocked it; I tried turning around. It was a no go. I was stuck, and was just getting ‘stucker’ by the minute.

Worse yet, my efforts had, by now put me absolutely up against the building! The metal feet of my wheel chair were actually jammed up against the outer wall of my own apartment.

It was then that I reached for my cell phone to call management or even 911 if I had to sit there long enough, only to realize that IT WAS NOT THERE! Nor was my cordless phone that I often carry in a side pocket of the chair.

I looked around, as best I could through the bushes, and there was no one it sight. It was then I realized I could be sitting there staring at the wall of my building a long time before someone came by. And I started laughing, I could not help it. It was so stupid it was funny!

Luckily, it was middle afternoon, and people would start coming home and parking eventually. I planned to holler, loud and clear, at the first person that appeared. I just hoped I would be heard, sitting there facing the building and between the bushes. It was then that I first got a little scared. Still, it was funny, here was this fat old woman sitting up against the wall, stuck in her wheelchair, giggling. Whomever I could get to help me would probably call the men in the white jackets!

Sure enough, just a few minutes later, a car pulled in and parked on the other side of the lot. I heard it, and started calling for help. She heard me, though she told me later that she could not see me! She, an unknown neighbor who lived in the next building, came over to investigate, and asked if I needed help.

"Ohhhh yesss," I said.

I sent her to get someone to help her, and a few minutes later, she came back with still another unknown neighbor, a young man.

I instructed them how to switch the wheelchair to manual operation. The woman helped me stand up against the building (I did not put my weight on my bad ankle), she ‘balanced me’ as I held on to a window frame. At which point the man was able to pull my chair back just inches (probably less than 6!), to get the big middle wheels on the grass. They then helped me to the chair, and watched carefully as I made my way back to the sidewalk.

I went back inside my apartment, grateful to be there, more than a little embarrassed, and upset with still another wheelchair adventure ‘under my belt’.

The thing is, I want to ‘do for myself!’ I do not want to wait for someone else to do things for me! I HATE asking people for things (I really do). However, a lesson has been learned. I will not go outside again without a phone! And the next time I get a cell phone, I will make sure I get TWO phones on the same line, so one can just live on the wheelchair. I tend to put it in my waist pack, then forget to take it out and put it back on the wheelchair, and I never wear the waist pack around the apartment.

And next time, the wire antenna will just have to stay tangled and in plain sight till I can find someone who will fix it for me. Sigh...